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Our Infinity stories

Moments of inspiration, partnership and connection in our fight against rare diseases worldwide

Published 11 August 2021

In this time more than ever, it is the smallest actions that can have the greatest impact for the rare disease community.We live in an ever-changing world, and to truly make a change, we must join forces, connect and collaborate.

Our operational model, Infinity, enables us to work in a unique way with the rare conditions ecosystem across the globe. Spanning the team, we have individual Rare Conditions Partners (RCPs) working on the ground collaborating with customers and patients to ensure we are being flexible, agile and making an impact, so we can bring more value to patients, faster.

Below are four stories that illustrate how our RCPs are accomplishing this through our innovative ways of working.

Starting a spinal muscular atrophy (SMA) community

Find out how RCP, Ahmed Agha, pushed boundaries and changed mindsets to support a family suffering with SMA.

Child holding parents’ hand

Across the world, patients with rare conditions are part of an underserved community, where diagnosis is often delayed and, even when identified, patients may receive treatment a little too late. During his first few weeks as an RCP, Ahmed knew that in order to support the community, he needed to be part of it.

To begin with, Ahmed identified stakeholders he could work closely with to develop a plan to raise awareness of the condition. This led to the use of simple digital tools, which Ahmed built, to unite a grassroots SMA community made up of patients and their families from across the country. Together, their collective efforts opened doors to the government and moved conversations beyond pricing, to focus on ensuring patients had access to the support they needed.

With insights from the community, Ahmed was able to connect with patients’ families and facilitate advisory boards for carers, enabling their voices to be heard.

“I didn’t realise the extent of SMA and the impact it has on families until I spoke directly with the patient community,” says Ahmed. “I learnt more about what it means to live with this devastating condition in one hour than in my entire experience with it during my career. There is so much that only people living with the condition will fully understand, but I realised that it’s our job to make ourselves understand and support them in any way we can; with a clear lens and no presumptions. We are on a journey to help patients. We may not know all the answers and it won’t always be easy, but I am confident that by working together, we can make a difference.”

Improving care in Huntington’s Disease (HD)

One meeting or phone call can result in life-changing outcomes for patients. Read more about how RCPs Nathalie Budd and Marianela Gamboa connected and provided support to HD patients in Trinidad.

Patient and healthcare provider looking at digital health tools

Building partnerships and collaborating beyond the industry has brought about opportunities our RCPs would have never imagined. “I’ve experienced that even the smallest and simplest steps can make the biggest changes, and the ripple effects of one meeting or one phone call, can result in life-changing outcomes for patients across the world,” RCP Nathalie Budd explains:

“I attended a meeting in Canada with a patient organisation and physicians a few months ago and I was amazed to hear about all the things they were doing for patients with HD. What fascinated me even more was that they then talked about another country, Trinidad, which at the time, had nothing for Huntington’s patients: no clinics, no physicians and, therefore, no known patients.

I got in contact with my counterpart RCP in the Carribean, Marianela. We knew instantly that the need for training and support was urgent, and before I knew it, we all joined forces to see how we could help. Starting from zero, we were able to support these physicians by bringing the resources, materials and education needed for the country to not only recognise and diagnose Huntington’s patients, but to treat them too.

For us, being an RCP means being able to embrace these opportunities. I can have limitless conversations, build relationships and push boundaries – not only in my own country, but in other countries as well.

We feel very proud being able to work in such a fluid way and although being an RCP has enabled me to do so, it’s not the reason I continue to be one. You see, whether we work in the industry or not, partnerships and expanding your knowledge beyond textbook learnings is so important to continue to help support these incredible patients. So, let’s keep connecting, discovering and riding these waves of opportunities together.”

Networking to reinvent solutions for SMA patients

Find out how RCP Nisha Narang helped many children with SMA across Canada.

Child looking outside the window

Back in the 1960s in France, a treatment, known as the Garchois brace, was used to support people with paralytic scoliosis. With a little out-of-the-box thinking, however, physicians in France found another use for it; to support the spinal development of children living longer with SMA.

Our RCP Nisha was working closely with a physician in Canada who was aware of the life-changing impact the brace had made across the patient population in France. He had an idea to bring the brace to Canada and thought “What if the team could apply these learnings and expertise to support our patients?” Through Infinity and working with her colleagues based in France, Nisha was able to facilitate and help his idea become a reality by bringing the learnings and expertise of the brace to Canada so it could be used for local patients.

“We are moving into new territory for any pharma company and joining forces with our peers to bring our collective knowledge together and make dreams a reality. There are no boundaries, no borders, no silos – only teams of people asking the question ‘What if we can deliver more?’, and then working together to make it happen. Since working on the project, many children from across Canada have piloted and benefited from this ‘new’ solution. I’m excited to see where else the Garchois brace will travel and how many more lives it will impact,” says Nisha.

“If we can deliver pizzas to homes, then why can’t we do the same for patients’ treatments?”

Our medicine home delivery service is providing support to patients in more than 26 countries.

Woman being delivered boxes at the door

This was a question that members of the Rare Conditions team asked themselves when COVID-19 began to disrupt healthcare systems around the world early last year. While everyone was told to ‘Stay at Home’, the pandemic hindered access to care for those living with rare conditions with three out of ten patients stating that it had caused ‘life-threatening disruption’ to their health.1

The team used this early period of the pandemic to recalibrate how treatments could be delivered to patients in the safety and comfort of their own homes, applying a design-thinking framework to tackle problems that were frequently faced in the delivery of medicines, such as delivery logistics, pharmacy and dispensing, homecare capabilities and legal issues. “Driven by patients’ insights and preferences, the Integrated Delivery to Patients (ID2P) project kicked off in June 2020 with the aim of improving homecare delivery of treatment in more than 26 countries,” explains Salomon Schnadower, the ID2P Programme Lead.

Each country presented its own unique set of challenges. Whether it was delivering a treatment to a patient living in a remote village in Kenya with no major roads, or simplifying the patient journey by reducing the number of referrals for a patient in China – ID2P started with a patient-first approach by looking at homecare services through their lens to help Roche deliver better experiences for patients. “Born out of necessity during the pandemic, ID2P has forever changed the way treatment can be delivered. As we look to the future in our post-pandemic world, patients will now spend less time in hospitals and more time at home together with their families and friends.”

Reference

  1. EURORDIS. Rare Disease Europe. ‘How has COVID-19 impacted people with rare diseases?’ November 2020.
    https://download2.eurordis.org/rbv/covid19survey/covid_infographics_final.pdf

Tags: Patients, Society,